Wednesday, March 20, 2013

Who I Am

March 20, 2013

Tomorrow is World Down Syndrome Day!  Because it's 3/21 and DS comes from having 3 of the 21st chromosome.  It's the perfect day of the year to bring awareness, don't you think?

The International Down Syndrome Coalition has a campaign going...a Blog Fest, if you will.  Calling all bloggers!  Tell us about you and Down syndrome!

Me and Lea, at a castle in Germany!

I've been thinking about it for a week.  I could write a book (or 2) on the topic!  So I decided to narrow it down and focus on Who I Am Now.  Because it's different than who I was when Lea was born, 18 years ago.  Or who I was when she was in Early Intervention, starting public school, starting homeschooling, joining Special Olympics teams.

Who I was on Oct. 15, 1994

Who I Was comes into play an awful lot, though!  My inner Control Freak is having a hard time.  (Who am I kidding?  My Control Freak was never "inner."  She is always right on the outside!)  Since the minute Lea was born, my Control Freak took over.  Let's understand something here.  Being a Control Freak has negative connotations, but it's not all bad!  It meant I got her the best doctors from the get-go!  Pediatricians, geneticist, cardiologist, ophthalmologist, endocrinologist, and a very scary (but turned out good!) visit to a hematologist/oncologist.  It meant I started fighting for her rights as soon as I realized I needed 3 weeks old, when the local school district was dragging their feet on getting her started with her therapies.  That Control Freak was with me the whole way through her public school years, enjoying the many good things that came of it, but Freaking Out at the bad.  And finally, that Control Freak convinced me I could do a better job at home!  (Oh, and a big shout out to God, who gave me that idea!  Woo hoo, thanks, God!)

So Lea graduated from our little homeschool last summer.  Look at her now!

Daddy, Lainie, Lea and Mommy
Isn't that fabulous?  She is done, she is 18!  Wait....(insert that record scratching noise here)....done?  My Control Freak doesn't like that!  For the past 18 years, I was in charge of her EVERYTHING.  It's ok...take a deep breath, I tell my Control Freak.  All of that Control Freakishness was done for the good of the kids.  You still need to do what's best for her!  What's best for her is...letting go.  WHAT?  Yes, you know it's true.  I DO?  Yes.  *sigh* Yeah, you're right.

First step was summer camp.  Away from home for a week!  It was a camp for people with special needs.  They have an excellent staff!  Control Freak: Oh yeah?  Well, she can't eat gluten and milk products.  They will never handle that!  (Which they did, with perfection!)  What if they....What if they don't....Stop it!  She will be fine.  She will not just be fine, she will thrive!  Look here, Control Freak!!
Enjoying the sprinkler at Skyline Camp
See?  Not only did they take great care of her, but they took tons of pictures so me and my Control Freak could see her every day!

But wait, what's this?  She is an official ADULT now?  We have a great program through our public schools (gasp!) that can help her learn to be independent.  (Starting to hyperventilate)  It's ok...they give us parents a lot of information and a say in what she does there.  She is having a terrific time and learning tons!  (Feeling a little calmer.)

But wait, what's this?  As an adult, she is entitled to some disability services from the government.  Oh boy, here we go.  (Can you say paperwork?)  In comes an agency to help her get Medicaid, Social Security and  respite services.  (Because we BOTH need a break from each other!)  But this agency does not represent us.  They represent HER.  They work in her best interest.  But, says Control Freak, what about me?  Don't I get a say in this?  Yes, your opinion matters.  But bottom line is they are here to protect and help Lea.  Lea...who is learning to make her own decisions.  (Her OWN decisions?  ACK!!!)  Yes, Mama, she can do it!  Look who she picked as her respite caregiver! of the sweetest women on earth!  Who cares about Lea just as much as I do!
Oh, OK.  Hmmm, so Lea gets to have sleepovers, go to fun places and have a BFF?  And I don't have to worry or control anything?  Yep.  This is getting good.

So then Who I Am is a recovering Control Freak?  No.  I still have 15 year old Lainie to worry about!
LOL, it's just a prop cigarette!  But it highlights the dangers of giving up my Control Freak :)
Who I Am Now is the mother of an adult and an almost-adult.  I can see the benefits of being involved in every aspect of their lives.  I can also see that my little birdies need to spread their wings and fly!  I certainly made some mistakes (thanks to you, Control Freak.)  But being there for them along the way has helped me give them the tools they need to be free.  Who I Am Now is a Mama watching her babies grow up.  And loving it.
Parisians :)

Tuesday, March 5, 2013

What The R Word Means To Me

March 6, 2013

Today is the annual day of awareness about the R word.  "Spread the word to end the word," they say.

The R word...retarded, retard.  I can barely write it.  It hurts!  Let me tell you why.

Here is my beautiful daughter, Lea.
In Paris, Feb. 2013
Lea has Down syndrome.  Down syndrome comes with many challenges, one of which is her cognitive abilities.  Yes, Lea is, medically speaking, retarded.  Actually, even medically speaking, this is no longer the correct term.  It used to just mean slow.  But over the years, people have misused the term and twisted it into something ugly.

Before you argue about this, let me assure you I have heard all of the excuses, the justifications.  "I don't mean YOUR daughter!"  "I would NEVER call Lea that!"  "I don't mean a person, I just mean something is dumb."  "It's not even offensive."  "I won't say it in front of you!"

You are not getting the point.  Of course you won't call Lea the R word!  But using it in any form is hurtful to ME.  Whether or not you are calling my daughter the R word, your use of it is perpetuating a very bad stereotype of her.  You are right about one is not offensive to Lea.  That is because Lea is forgiving. Lea is kind.  Lea would not be hurt by that word.  But I am.  I AM.  Isn't THAT enough for you to stop saying it?  I may be standing behind you in line at the grocery store.  I may be sitting near you in a restaurant. I may be shopping in your store.  I am not asking you to stop saying the word around me.  I am asking you to stop saying the word.  Period.

You never know who is listening.